• Bloating and pain eventually leads to discovery of a tumor
• Given three chemotherapy options; choosing FOLFIRINOX
• Chemo stops working; lung nodules appear
• Switching to a different chemotherapy combination
• Possible use of Lynparza for lung nodules
After a routine appointment my gynecologist told me to take probiotics to see if that would help the bloating and pain. When it did not help, I went to my GP who got right on it and found the reason for the pain and bloating within the same day. Initially, I had an ultrasound and CT scan on October 31, 2016. I was told that I had a mass of about 4 x 3 cm in the tail of my pancreas.
I then went for an MRI in Charlottesville at University of Virginia. A few weeks later, I had an endoscopy in which, as I understand it, they went down my throat and took a sample of the tumor in the pancreas. I was also told at the time of the MRI that there were a few spots on my liver that could hardly be detected. I was diagnosed with inoperable pancreatic cancer, stage IV, in November 2016.
Choosing a Treatment
Since my cancer was inoperable because of the location of the tumor (near the artery and in the tail of the pancreas) I was told that I should see an oncologist. I heard that a certain oncologist in my hometown of Lynchburg, Virginia, was “good” so I met with Dr. Kathleen Paul at Centra Alan B. Pearson Regional Cancer Center. After my appointment with Dr. Paul I decided to start pursuing information about the next steps. She told me that my health was very good, and I had a good chance with chemo if I opted to do that. She suggested three different chemotherapy options. At first, I almost decided not to have any chemo because I had heard so many negative things about pancreatic cancer and the outcome. But, after thinking about my options for a few days and the quality of life I still wanted to have, I chose treatment with FOLFIRINOX, the chemo that was the strongest and most toxic of all the chemos suggested.
In April 2017 I went to Johns Hopkins in Baltimore, Maryland to get a second opinion. I met with the “tumor board” there, and the doctors there were very helpful and knowledgeable. I was told that the best treatment I could get for this stage and location of the tumor and the kind of cells would be the FOLFIRINOX, as long as I could handle the side effects.
For the treatment I had to wear a pump for two days, then go back to the clinic, have it removed and have a shot of Neulasta. The side effects of FOLFIRINOX were very hard on me. I started taking Claritin (to counteract a side effect of the Neulasta) for five days the day I got the pump removed. I had nausea, although no vomiting, and starting at about day three I would have a terrible diarrhea attack with extreme pain in my lower abdomen from the chemo. I would then take two Imodium pills to stop the diarrhea. By day six or so, I would start to feel better, but I was still very tired.
I found that dehydration would really take its toll on me, so twice after the chemo treatment I would return to the clinic for a liter of fluid, which really helped. I found that for a few days after treatment the taste of food and water was very unappetizing, so the two liters of fluid really helped with this too. On top of this I had the “chemo fog” that goes along with treatment (a dullness mixed with nausea and extreme fatigue). I got and still have neuropathy in my feet, toes, and ankles. I lost very little hair so never really had to wear a wig. Overall, I do not have any pain or digestive disorders when I keep within my good eating habits and I take Creon three times a day.
I can truly say that aside from the horrific side effects from FOLFIRINOX, my quality of life was better than I ever expected. Several times if my platelet count was not high enough, I would not have a treatment right away, and that also helped my quality of life.
The treatment also affected my emotional state. In 2017, after a few months of chemo I got very sad, crying a lot, with weakness. My doctor put me on Lexapro and it has made a world of difference to everything I do. I also take Ativan every night which helps me relax and sleep well.
I had one other change to my life. I was a professional singer—I graduated with a music degree from college and have pursued a career in that ever since. Music is my passion and has been my livelihood, and I love to sing German lieder and sacred music. But I stopped singing “professionally” as of two years ago. My oncologist encouraged me so much to keep it up, but singing, as with a sport, takes your whole body’s energy and emotion. With the chemo side effects, singing the way I used to is no longer an option for me. I really don’t miss it since for so long I sang the way I really wanted to.
Should I Change my Plan?
After being treated for about one year with FOLFIRINOX, my tumor had shrunk and the tumor marker was very low. I went back up to Johns Hopkins to find out what their suggestions might be. I was told that there was a good “chance” that I would benefit from surgery to get rid of the tumor. There was then no trace of anything in the liver or anywhere else. However, this would be a “trial surgery” and before the surgery, I would have to have several rounds of intense radiation in a special machine designed to shrink the tumor even more. After that the surgery would take place. But the doctors kept referring to the surgery as a “trial.”
I was 76 then, and Johns Hopkins is a five- to six-hour drive from our home. I have felt all through this journey that quality of life is my priority, not experimenting with my body. I have had my share of surgeries in my life, and just thinking of being on “trial” with surgery, was not what I wanted. Surgery was not on my list of end-of-life activities. So, I opted not to have surgery, and I am still here to tell the story.
Time to Change Treatments
For nearly two years I tolerated this chemotherapy. But I found out in August 2018 that the chemo was no longer doing its job on the tumor. The pancreatic cancer metastasized and spread into my lungs in tiny nodules. I underwent genomic testing of my tumor and the following mutations were found: MSI Stable; PDL 1 0%; BRCA2 mutation; KRAS mutation; TP53 mutation.
Dr. Paul put me on another chemo combination of Gemzar and Abraxane. I did not tolerate the combination very well so she eliminated the Abraxane. I continue to have side effects, and this time I have lost my hair.
If my current treatment doesn’t bring good results, Dr. Paul would like to try a pill called Lynparza. It will still produce side effects that I will or will not tolerate. Only time will tell on that. But right now the chemotherapy is working, and my tumors are getting smaller.